Anywhere But Bed

Sick.  Again. In bed. Again. I want to be running, going to the Jazz Fest tonight, seeing friends off who are moving to Denver.

I haven’t written in some time because I was feeling well. The last thing I want to do when I feel well is sit inside. Instead, I catch up on all the things I let slide from my previous “flare.”  I run, play tennis, visit friends, go to dinner and movies and the pool. Of course, I try to water down everything in fear of this maddeningly unpredictable disease.  I’m not really sure what initiated the resurrection of symptoms this time. Was it the tennis lesson? The heat?  Running an 11 minute mile instead of the 12?  Was it nothing?

If I could just figure it out, I could prepare to be on the disabled list.   In this game, there is nothing heroic about being benched.

I had a great week and I am indeed grateful for that.  But now, after walking around the house, drinking coffee, taking a cup full of vitamins, and TRYING really hard to put a jaunt in my step, I just caved.  Hate caving!  But I had to.I kept lying my head down on any available surface, reluctantly sitting in a chair that made my head hurt, I finally acquiesced , looking outside at the balmy August day, and got back in bed.  My family is out and I’m reminded of the days of my youth I spent hungover.  I didn’t like that either and no longer even drink, but the cause and effect with a hangover are pretty clear.  M.E. is baffling.

Only a few more weeks before I go to Stanford.  I’ve been on a waitlist for well over a year but remain cautious with my expectations.

Still, there’s hope right?  Stanford, give me the Rituximab.  I’m desperate to rejoin the living.

“One study from Stanford in 2014 found that the brains of patients with the disease have diminished white matter as well as consistent white matter abnormalities in the right hemisphere. Researchers in Norway found that a medicine called Rituximab, originally made for treating certain cancers and rheumatoid arthritis, was effective in treating ME/CFS.”

Feeling charitable?


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